In November 2001, Evie was born a healthy looking baby.
The only worry her parents had was the red mark at the bottom of her back. While the midwives assured her parents the mark was normal, a year later on her first birthday, they were informed that the mark indicated she had a tethered spinal cord. Evie was diagnosed with Lipomyelomeningocele.
Now 16 years old, despite her condition affecting her lower leg, bladder and bowel, Evie inspires young people with spinal cord injuries all over the country. From becoming an award-winning horse rider to educating others as an ambassador for hidden disabilities, it’s no surprise that the saying she lives by is ‘find a way – not an excuse’.
Ahead of her nomination for ‘Young Person of the Year Award’ sponsored by our team here at Birchall Blackburn Law, at the Spinal Injuries Association’s ‘Rebuilding Lives Awards‘ 2018, we speak to Evie about her challenges, her aspirations, and the common questions she’s asked by other young people about her condition.
Hi Evie. Can you give us a quick outline of your condition and how it’s enabled you to help others?
I was born with a tethered spinal cord – Lipomyelomeningocele. It’s a form of Spina Bifida. It wasn’t apparent until I went for a check up on an enlarged toe and I was given an MRI scan because of a birthmark on my back. My spinal cord was getting stretched when normally, it should hang freely.
At 12-years-old, I decided to be open about my issues as I was being talked about at school. I decided it was better to be in charge so no-one had a secret they could use against me. Because my disability is hidden, it led to me wanting to educate children and enabled me to be available to talk to families who had children with bladder and bowel issues – some with spinal cord injuries. It’s helped me cope and has given me a focus.
When did you first get involved in riding?
I first rode when I was about 5. It soon became apparent that riding helped ease the tightness in my legs and when mum looked into it, a doctor used it with a girl many years ago as it enabled more movement. So it’s great physio for me mentally and physically.
Horses don’t judge and whatever horrid thing my body was doing, they never judged me. It helped to go to a riding school as it gave me the chance to socialise and gave friends the chance to understand what I was dealing with. I developed coping mechanisms.
How does competing make you feel?
When I’m competing I’m not a patient or an illness so I feel so much better mentally – plus, it gives me incentive to be at my best physically even when I’m stuck in hospital.
You’re passionate about educating other young people about invisible disabilities, what’s the most common question that people ask you about them?
To be honest the youngest children will openly ask me about bladder and bowel, like, “Do I poo myself?”, which is fantastic because I can talk openly with them and hopefully change the way they react.
The secondary school age and older tend to be more interested in how I cope with looking normal and using disabled facilities. To be honest, it doesn’t bother me but again, if I can change how they react to others it makes lives easier. I tend to say: “just smile because you never know what that person is dealing with.”
Is there someone out there that inspires you?
Clare Lomas is just incredible. There’s nothing she feels she cannot do and that inspires so many. Also Hannah Francis – a young girl who inspired so many as she fought with cancer.
What’s your proudest achievement so far?
There’s a few!
Being able to connect with young children. They listen when I talk about the issues many people face, even if it’s concerning bladder and bowel.
My little book that helps educate under 10s on hidden disability which is hopefully being printed this summer.
Riding into the International Arena at Munich with thousands of spectators (in my pampers nappy) and white breeches.
Is there a rule or motto that you live by?
My saying is: “FIND A WAY – NOT AN EXCUSE”
You’ve achieved your fair share of incredible awards! How does it feel to be nominated for a Young Persons Award at SIA’s Rebuilding Lives Awards?
I think it’s amazing that people are supporting what I’m doing. I guess it makes me realise that what I’m trying to achieve is now happening. Also, what I dreamt of last year is now happening so I need to make my goals bigger because they’re possible (with the right plan).
What advice would you give to someone that has been diagnosed with a spinal cord injury?
Don’t underestimate yourself as anything is possible with hard work. It’s about finding a way to do what you love and although that’s sometimes difficult, there’s always another way – so keep trying!
If you are passionate about a sport or hobby you will try every way possible to continue and discover hidden strengths.
What would you love to achieve in the future?
Compete in the Paralympics and educate many more school children so that there’s more support for young children with disabilities to grow up and achieve in an educated environment. If I can reach as many people as possible, I have a chance to improve people’s lives as they grow up.
Thank you for taking the time to speak to us Evie, good luck!
SIA’s Rebuilding Lives Awards took place on Wednesday 6 June 2018 at the Williams Conference Centre. This year, Birchall Blackburn Law sponsored the Young Person of the Year Award, which will be presented to a young spinal cord injured person under the age of 25, who has provided an outstanding level of contribution to the SCI community, and their SCI peers.
For free and confidential legal advice on spinal injuries after an accident, don’t hesitate to get in contact with us on 0800 614 722 or take a look here.